Crohn's Patients

[thebigd^]

Originally Posted by TDWPfan111

so...I'm on my first tolerance break in a very long time. I wasnt getting the effects I usto love and I wanted to see how my crohns was without out it.. and to tell you the truth... I'm in fuckin rough shape..

my stomach is extremely iratable and I feel like blahhh..no energy.. and its effecting my mood because I dont wanna deal with any annoying stomach pains..

even when I do smoke, I barely smoke .5 a day.. enless its some type of occassion with friends (pink floyd light shows at MSOB, movie I would like to get high for, some TV show or album I wanna watch/listen baked outta my mind...I myself consume probally only 1 gram. and I cant get high grade bud, all mids..

blah

I so much admire this. One thing about smoking marijuana medically is that its still a drug. ( To some extent). It can still lead you down a destructive path if you do not respect what your doing and be head strong. I would smoke like a quarter a day and just eat everything I wanted because I believed that if i'm smoking weed, well, nothing can happen to me. WRONG! I've really learned to slow down on smoking for medical reasons. Truthfully these days I can deal with my disease good enough that I smoke to just get blitzed.

Originally Posted by floating_by

I don't know what happened, but I've had some more tolerable days the last couple of days.
Sorry, not much to report on the MJ front. I have been avoiding dairy (milk mostly, as I had been eating a bowl of rice cereal with milk at night before bed.) Since stopping the milk, the stomach has been better, and only 1 BM yesterday and so far only 1 today! Had headaches the last 4 nights after dinner, not sure what's up with that. A little dizzy sometimes too when I stand up. My jaw has been killing me. It's like TMJ, but came on suddenly with my flare. I suppose that is the headache/dizziness culprit.

How can you possibly have 1 BM a day. I'm extremely jealous, and how can you even tolerate milk?! I guess everyone is different, I know that I experience a lot more of the UC symptoms then I do Chrones. Which is fairly odd because as the doctors said it should be straight at 50/50.

To think about it, I haven't had milk in two years. Why does your jaw hurt so much? I noticed I'd get some joint and ache pains but nothing as bad as Erythema NoDosum which is one of the more painful things ive had to deal with.

[floating_by]

Originally Posted by thebigd^

I so much admire this. One thing about smoking marijuana medically is that its still a drug. ( To some extent). It can still lead you down a destructive path if you do not respect what your doing and be head strong. I would smoke like a quarter a day and just eat everything I wanted because I believed that if i'm smoking weed, well, nothing can happen to me. WRONG! I've really learned to slow down on smoking for medical reasons. Truthfully these days I can deal with my disease good enough that I smoke to just get blitzed.



How can you possibly have 1 BM a day. I'm extremely jealous, and how can you even tolerate milk?! I guess everyone is different, I know that I experience a lot more of the UC symptoms then I do Chrones. Which is fairly odd because as the doctors said it should be straight at 50/50.

To think about it, I haven't had milk in two years. Why does your jaw hurt so much? I noticed I'd get some joint and ache pains but nothing as bad as Erythema NoDosum which is one of the more painful things ive had to deal with.

To comment about the "T-break" above:
I hadn't smoked for 12 years, so I was pretty well floored the first time I toked again recently. I took about 6 or 8 hits and was GONE for about 12 hours. It was crazy. Now, I know my limits a little better, and I try not to take more than about 2-3 hits. I'm trying to be as responsible as I can be. I used to smoke 1/8 a day when I partied. So far, so good. I just use it as a medicine. My stomach was OK this weekend, so I didn't toke.

BigD,

I have I guess "mild" digestive issues with my Crohn's (aside from this extra hole I have in my ass now!) A lot of it is weird joint and muscle pains for me that travel around to different parts of my body. My hands were so bad they were waking me up. Now, it's time for my middle toes to wake me up and my jaw to hurt.
It's the weirdest disease. I have sores on my gums today. I went from 4-5 BM's a day to 1 in the last couple of days. (Thank goodness.) Maybe the dairy was making my stomach act up? I'll have to continue to refrain and see if it helps.

Erythema NoDosum- that sounds nasty. Is it gone now? Did you get the lumps/bruising from it?

[thebigd^]

Originally Posted by floating_by

To comment about the "T-break" above:
I hadn't smoked for 12 years, so I was pretty well floored the first time I toked again recently. I took about 6 or 8 hits and was GONE for about 12 hours. It was crazy. Now, I know my limits a little better, and I try not to take more than about 2-3 hits. I'm trying to be as responsible as I can be. I used to smoke 1/8 a day when I partied. So far, so good. I just use it as a medicine. My stomach was OK this weekend, so I didn't toke.

BigD,

I have I guess "mild" digestive issues with my Crohn's (aside from this extra hole I have in my ass now!) A lot of it is weird joint and muscle pains for me that travel around to different parts of my body. My hands were so bad they were waking me up. Now, it's time for my middle toes to wake me up and my jaw to hurt.
It's the weirdest disease. I have sores on my gums today. I went from 4-5 BM's a day to 1 in the last couple of days. (Thank goodness.) Maybe the dairy was making my stomach act up? I'll have to continue to refrain and see if it helps.

Erythema NoDosum- that sounds nasty. Is it gone now? Did you get the lumps/bruising from it?

Oh man, I had Eyrthema so bad it wasn't funny. Huge lumps on the legs, they actually gave me 10mg percosets for it. It wasn't JUST the hurting but it itched as bad as my sulfa allergy reaction. It was a little unsettling because I was one of the like three patients my GI had seen with that. Its gone now, had it for the first year of my troubles and it went away and never came back. BUT, it left my legs at a certain weak point. I cannot barely be hit in the shins or it will bruise like you've never seen. It also hurts 10 times more then it really should if I were to get hit there.

As for your gums, you do know that is simply from Chrones, infact when I was in the bathroom I was reading my "Everything you need to know about UC/Chrones" book (haha @ the irony btw ) but I just read about that 10 minutes prior to reading your reply.

[floating_by]

Originally Posted by thebigd^

Oh man, I had Eyrthema so bad it wasn't funny. Huge lumps on the legs, they actually gave me 10mg percosets for it. It wasn't JUST the hurting but it itched as bad as my sulfa allergy reaction. It was a little unsettling because I was one of the like three patients my GI had seen with that. Its gone now, had it for the first year of my troubles and it went away and never came back. BUT, it left my legs at a certain weak point. I cannot barely be hit in the shins or it will bruise like you've never seen. It also hurts 10 times more then it really should if I were to get hit there.

As for your gums, you do know that is simply from Chrones, infact when I was in the bathroom I was reading my "Everything you need to know about UC/Chrones" book (haha @ the irony btw ) but I just read about that 10 minutes prior to reading your reply.

Crohn's book on the can. Too much!!
Yeah, it's pretty annoying going to the dentist. Every time they say, "Ooh, your gums are really red!" Yeah, I know, I still have Crohn's! I try to get it into their heads, but they don't seem to understand. I've had this with the gums before, but not for a while. Last fall, my front teeth were loose my gums were so swollen.

[thebigd^]

Originally Posted by floating_by

Crohn's book on the can. Too much!!
Yeah, it's pretty annoying going to the dentist. Every time they say, "Ooh, your gums are really red!" Yeah, I know, I still have Crohn's! I try to get it into their heads, but they don't seem to understand. I've had this with the gums before, but not for a while. Last fall, my front teeth were loose my gums were so swollen.

Thats horrific! I couldn't imagine something like that. It really is amazing how just INFLAMMATION of one intestine can cause so much grief.

[dle_240]

When I went to the dentist for a check up last year my teeth were screwed up from all the acid that would come up into my mouth. I think I had to go in 3-4 times for fillines because I had so many to do and they had to spread it out. You guys ever get blisters or sores in the back of your mouth? THey always seem to pop up in the morning. Doc says it's all the acid from my stomach comming into my mouth and sitting whn i'm sleeping.

[floating_by]

Originally Posted by dle_240

When I went to the dentist for a check up last year my teeth were screwed up from all the acid that would come up into my mouth. I think I had to go in 3-4 times for fillines because I had so many to do and they had to spread it out. You guys ever get blisters or sores in the back of your mouth? THey always seem to pop up in the morning. Doc says it's all the acid from my stomach comming into my mouth and sitting whn i'm sleeping.

I had an ulcer form on my uvula last fall. I thought I had strep or something. I don't seem to have acid reflux though (fortunately.)

[floating_by]

I should have smoked last night.

After having to work some overtime and having a generally stressful day, I got home and was just exhausted. I was on the brink of a headache again all night, and just felt lifeless and laid on the couch. I took 2 Tylenols before I went to bed for aches and pains and my semi-headache, and went to bed very early for me (10:15.) Within an hour, I woke up and I had sweat through my pillows and sheets. I had sweat dripping off of me everywhere. Just freaky. I've had this a lot lately, and especially after I take Tylenol. I think I have to stop taking it. Holy crap, what CAN I take now? If I have a headache tonight, I'm sparking up. I haven't had any reactions like that from MJ.

[thebigd^]

Originally Posted by floating_by

I should have smoked last night.

After having to work some overtime and having a generally stressful day, I got home and was just exhausted. I was on the brink of a headache again all night, and just felt lifeless and laid on the couch. I took 2 Tylenols before I went to bed for aches and pains and my semi-headache, and went to bed very early for me (10:15.) Within an hour, I woke up and I had sweat through my pillows and sheets. I had sweat dripping off of me everywhere. Just freaky. I've had this a lot lately, and especially after I take Tylenol. I think I have to stop taking it. Holy crap, what CAN I take now? If I have a headache tonight, I'm sparking up. I haven't had any reactions like that from MJ.

Good Morning! ( lol ). I used to have problems with Tylenol like that. Even if I didn't have a fever some nights I'd still wake up drenched in sweat. It probably has to be the nastiest feeling ever, not to mention that means you got to do some laundry that day unexpectedly. Since then I've had no issue with Tylenol. I generally take two to three Tylenol PM's every night. Dont really want to be on Ambien, and I've had some "Recreational" troubles with Xanax. I have no issues with the Tylenol PM's at all.

edit: try Aleve. It is an anti-inflammatory and it should help you a little bit more with headache's and joint pains. Or a nice Valium or Flexiril will also do the trick for that

I'm up early this morning, didn't have to many BM's through the night just one. I keep getting these bumps that look like chigger bites that last maybe an hour and itch more then ive ever had an itch. They keep popping up on the shoulder blades, thighs, arms, legs. This generally really sucks because it just kept me awake.

[dle_240]

Well I decided I would post a sotry to bring the thread back to life. I know a while back when I was a lot sicker and getting a lot of test done (maybe 7-8 grade) I had to get an endoscopy done. Well when I was finished and wook up they told me I poped some blood vessel in my eyes because of some type of gas..idk I forget. So I ended up with red eyes for maybe 3 weeks. People always had this scared look on there face when they aw me for that short period of time. lol This ever happen to any of you guys before?

[floating_by]

Originally Posted by dle_240

Well I decided I would post a sotry to bring the thread back to life. I know a while back when I was a lot sicker and getting a lot of test done (maybe 7-8 grade) I had to get an endoscopy done. Well when I was finished and wook up they told me I poped some blood vessel in my eyes because of some type of gas..idk I forget. So I ended up with red eyes for maybe 3 weeks. People always had this scared look on there face when they aw me for that short period of time. lol This ever happen to any of you guys before?

I've had an endoscopy before (they diagnosed my Celiac Disease at that time) but fortunately did not have any complications from it. They tend to shoot air into you when they go from the other end, but I don't know what kind of gas they might use for an endoscopy.
I've broken a couple of blood vessels in my eye lately from the Crohn's. My family was a bit taken aback when they saw it.

[floating_by]

So today's Crohn's adventure: my feet.

I feel as though I have broken a toe on each foot. I can't "roll forward" on my feet -especially the left one. It's all swollen and sore right above the toes. I had to wear running shoes to work today (quite the look with my dress pants and shirt.)

Damn, I am at the point I just don't know what to do anymore. I'm thinking about the Mayo Clinic. I am so worn out and frustrated, it's like I don't have the energy to find a new doctor right now. I need some sort of treatment plan I think. I'm just apprehensive about the Mayo because I'm afraid I'll go down there and go through all sorts of testing just to have them tell me to go on Remicade too. That would be a major disappointment.

[thebigd^]

Originally Posted by floating_by

So today's Crohn's adventure: my feet.

I feel as though I have broken a toe on each foot. I can't "roll forward" on my feet -especially the left one. It's all swollen and sore right above the toes. I had to wear running shoes to work today (quite the look with my dress pants and shirt.)

Damn, I am at the point I just don't know what to do anymore. I'm thinking about the Mayo Clinic. I am so worn out and frustrated, it's like I don't have the energy to find a new doctor right now. I need some sort of treatment plan I think. I'm just apprehensive about the Mayo because I'm afraid I'll go down there and go through all sorts of testing just to have them tell me to go on Remicade too. That would be a major disappointment.

About the energy and not having any, Cocaine is my first answer ( haha oh well, would also help with those pains! im kidding btw I would never suggest coke to someone ).

But the realistic answer is are you taking B12 shots every week? I have the same energy problem and I take an at home B12 shot every week. Seems to work. Also, I know we aren't suppose to have caffeine but that rule can be broken with some alertness. When I go to work and I have no energy I usually drink a 16oz cup of Dr. Pepper. Gives me some energy it seems. Keep up the Mary Jane, even if it seems like its becoming a daily routine. Just use some self control to keep your tolerance low and the weed working.

[1blood1life]

I'm checking back in here again...actually on a t-break right now, it's been 9 days so far. I was at the point where I wasn't getting as high as I wanted to be and wasn't feeling the same level of effectiveness.

I'm not doing terribly well on the Crohn's front; honestly, I'm doing pretty shitty. I hadn't been able to keep more than maybe 1000 calories down for the past 18 days, which was quite the experience. Not even MJ helped with that one. It definitely helped with the nausea, but didn't make me eat anymore. So, my doctor had me try out Zofran for the nausea, which helped, but same thing, no go with the eating. Finally yesterday, he gave me this med called Reglan. Seriously, there are some scary side effects to this drug, and I've been on both Remicade and Humira, and those side effects are nothing. Apparently, this Reglan could cause suicidal thoughts, hallucinations, tremors, confusion, and a million other things. But, it's helped tremendously in the past day, so I'm putting up with the possibility of some weird shit happening. I'm still doing Humira shots every week, but still having at least a few BMs a day.

I think I'm going to end the t-break this weekend though.

[thebigd^]

Originally Posted by 1blood1life

I'm checking back in here again...actually on a t-break right now, it's been 9 days so far. I was at the point where I wasn't getting as high as I wanted to be and wasn't feeling the same level of effectiveness.

I'm not doing terribly well on the Crohn's front; honestly, I'm doing pretty shitty. I hadn't been able to keep more than maybe 1000 calories down for the past 18 days, which was quite the experience. Not even MJ helped with that one. It definitely helped with the nausea, but didn't make me eat anymore. So, my doctor had me try out Zofran for the nausea, which helped, but same thing, no go with the eating. Finally yesterday, he gave me this med called Reglan. Seriously, there are some scary side effects to this drug, and I've been on both Remicade and Humira, and those side effects are nothing. Apparently, this Reglan could cause suicidal thoughts, hallucinations, tremors, confusion, and a million other things. But, it's helped tremendously in the past day, so I'm putting up with the possibility of some weird shit happening. I'm still doing Humira shots every week, but still having at least a few BMs a day.

I think I'm going to end the t-break this weekend though.

Question about the humira, i know it helps alot of the side effects but does it town down the cramps? Thats the main reason why I use MJ and xanax is because they seem to weakin the cramps, i hate cramps. lol